28 November 2017

#12daysofangels - GIVING TUESDAY CAMPAIGN

Black FridaySmall Shop SaturdayCyber Monday…

You’ve checked off so much from your holiday shopping list - now its time to check off your charity list. This GIVING TUESDAY please consider making a donation to our #12daysofangels campaign. Funds raised during this campaign will help us transform the lives of grieving families through the construction of ‘Hayden’s House of Healing’ – a retreat center we are raising funds to build on the east coast.

Each day of this campaign we will feature a mother who has attended one of our ‘Healing of the Heart’ retreats. You’ll hear about their angel and how the retreat has had a profound impact on each of them. Our hope is that these brave women will inspire you the same as they have inspired us and you will join our fundraising efforts this holiday season!

Our angel Hayden lived for 127 days. His time was too short - but he left a lasting impression on many. Along with the women who have attended our retreats, he is the inspiration behind ‘Hayden’s House of Healing’ and so to honor him and his 127 days here on earth, we are setting a goal revolved around him. Our goal is to have 127 people commit to donating $5 a day each day ($60 total) of the #12daysofangels campaign. Donations can come $5 each day- or $60 at once. And of course – any amount is so greatly appreciated!

TO DONATE:

1. If you are on Facebook and you donate TODAY – Facebook is MATCHING all donations made to a 501c3 through the donate link on the thread of our page. If you scroll down, one of the top posts will be the donate button where all donations made today on GIVING TUESDAY will be matched!

2. You can also donate TODAY until DECEMBER 9th through PayPal- haydensheart@yahoo.com - please note #12daysofangels and we will add your donation to the campaign totals!

Hayden’s Holiday

Our final holiday for 2017 was enjoyed by the Cosby family whose daughter Ellis passed away at 6 months old this last November. Their three-year-old daughters wish was to go to Disney World!

‘We are so honored to have been chosen to be a part of a wonderful cause. That trip was the first time we laughed and smiled for days in over a year! We cannot thank everyone at Hayden's Heart enough!’ - David and Megan Cosby

Hayden’s House of Healing

Our first quarterly newsletter was released earlier this month. If you did not receive it and would like to, please email rob.dorsett@haydensheart.org

Please continue to share our project with those who may find passion for it alongside us by sharing our website: www.haydenshouse.org

Saturday March 24, 2018

118 Bathurst Ave | North Arlington | New Jersey | 07031

25 October 2017

This month we celebrate FIVE YEARS since founding Hayden’s Heart. When we launched just two months after loosing Hayden, we had no real direction – other than the knowledge that we wanted to support other CHD families through their journey.

And – 5 years later, that’s just what we do. But we don’t do it alone. We do it with 16 dedicated board members, a collection of over 30 committee members, hundreds of donors, and THOUSANDS of supporters all over the world.

It still takes my breath away when I think of the impact that one little baby boy was able to have on this world in just 5 months and 4 days.

It still leaves me speechless when I reflect on how far we’ve come, how great we’ve grown in such a short amount of time.

To all who have made Hayden’s Heart what it is today- we not only THANK YOU, we APPLAUD YOU. Cheers to the next five years- we can’t wait to see what’s in store…

01 October 2017

Hayden’s Heart Monthly Beat

OCTOBER

Flippin’ For a Cause

This month we are hosting a kid-friendly event at Flippin’ Out in Nutley, NJ! Space is limited and slots are filling up fast so please email ady.dorsett@haydensheart.org to secure your spot! Kids 3-12 are welcome and refreshments will be served! Suggested donation is $20 per child.

Heart to Heart Gala

We are just under TWO MONTHS out from our Heart to Heart Gala- honoring heart warrior Harper Renshaw and family.

Space is limited and tickets are selling fast- please visit the site below to secure your seats for this elegant event that you won’t want to miss! Loads of silent auction items, a special live auction, entertainment, open bar and great food- all supporting Hayden’s Heart and our mission to support heart families in need!

Hayden’s House of Healing

We recently launched a new branch to this campaign, the Peer-to- Peer fundraising tool. This easy to use tool allows supporters to create their own fundraising page through our online fundraising platform. You simply follow the link and choose to create an individual page, create a team, or join an already existing team. Once you select the best platform for you, the site will then direct you to personalize your page. You can add a profile picture, edit the goal amount, the text explaining why you are raising funds for this campaign, and more. The idea is that once your page is created, you will be able to publically share with your network to reach your personal fundraising goal!

If you wish to build a legacy for yourself, your family, a loved one, an organization or corporation, this could be a great way for you to do it!

Contact us:

07 September 2017

This sweet 4 year old girl is being honored at our 'Heart to Heart' Gala this November and a portion of the proceeds will go to her family to assist in medical bills, travel expenses and any other needs they may have for their sweet heart warrior!

Tickets for this November 18th event are on sale now and can be purchased here! We hope you will join us!

There are also sponsorship options and an opportunity to place an ad in our event program. And of course, all in-kind donations are being accepted for our raffle and silent auction! Please email tatum.heiser@haydensheart.org to donate to this event!

Please visit our website to support this event or for more information.

This blog comes straight from the family....

MEET HARPER!!

We arrived at our 20-week ultrasound with an abundance of hope and optimism. We had trouble conceiving our second child and decided to wait until this milestone date to break the good news to her big sister. We even bought a new “soon-to-be-sister” t-shirt to mark the occasion. But the happiness was quickly replaced with fear, confusion and devastation when we learned that our precious child had a severe congenital heart defect. After a series of tests, ultrasounds, and many consultations with our cardiac team at Children’s Hospital of Pennsylvania, we learned that Harper had Double Outlet Right Ventricle, along with a large Ventricle Septal Defect and Pulmonary Stenosis, a rare combination that our experienced team of doctors had never confronted.

We needed to grieve the loss of the healthy child we had hoped for and rally behind her to ensure she would be given every chance to extract every bit of joy that life has to offer. We were armed for the fight with a loving group of friends and family, along with a world-class medical staff that provided the right combination of compassion and honesty.

We were told that Harper would be safe while she was in the womb, but would be fighting for her life upon her much-anticipated entrance into the world. And fight she did! She had her first open heart surgery at 10 days old. In her first 4 years of life she’s had 3 open-heart surgeries, 2 cardiac catheterizations, and a plethora of EKG’s, echocardiograms, and blood draws. She was tube fed for the first two years of her life, and although we are tube free now, it still remains a daily battle to keep her weight stable.

Currently we are experiencing a wonderful lull in Harper’s heart journey. She has no more planned surgeries at this time and she runs, laughs and plays like any other child. That being said, due to Harper’s unique anatomy, her cardiac team does not have a next “plan of attack” for her heart condition. Unfortunately, due to the large VSD (hole) in the center of Harper’s heart, they were unable to complete a bi-ventricular heart repair that would have allowed her heart to function as a healthy heart. Instead they performed a single ventricle repair, not an optimal situation.

What this means for Harper, based on the complexity of her heart defect, is that we do not know what her future has in store. There has been talk of a heart transplant in her teen years or possibly a new procedure could be discovered between now then that might work for Harper, but we don’t have a plan of action, which can be a bit nerve wracking as her parents. Worry, unfortunately, creeps in around every corner, as a parent of a CHD child. Will a cold or a fall turn into a hospital visit, will a cold pool be too much for her heart to handle, should we let her participate in pee-wee soccer or dance class, will her immune system be able to handle the germs in preschool?

All those worries and concerns aside, Harper has taught us to live every day to its fullest because tomorrow is never guaranteed, no matter who you are. We try our best not to let Harper’s heart defect define her and so far it hasn’t. Harper is strong, bright, energetic, and maybe even a little naughty too ;)

We are eternally grateful for the various organizations and safety nets that have helped our family through these difficult and challenging times.

31 August 2017

Hayden's Heart Monthly Beat

September

SMILE SACS

Every August we compile care packages for five pediatric cardiac hospitals in honor of Hayden’s angel day. We fill them with loads of fun kid activities in hopes to bring a smile to the cardiac kids spending their summers in the hospital. This year we delivered 75 packages to 5 different cardiac units on the east coast!

THANK YOU to our local girl-scout troop and their incredible leader Melaine Curcio for assisting in compiling the bags- the girls did amazing again this year!

And lastly, THANK YOU to everyone who helped get the bags in the right hands to make sure we put some smiles on some cardiac kids in honor of sweet Hayden.

ANGEL FLIGHT EAST

HEART FAMILIES!! Great news!! We are so excited to have been contacted by Angel Flight East and are happy to spread the word about their incredible organization!

The mission of Angel Flight East is to provide FREE air transportation to qualified patients and their families by arranging flights to distant medical facilities, delivering supplies to disaster areas, and reuniting families during desperate times.

If you or someone you know has questions about their services or could benefit from this, please contact us OR Jess Ames- jessames@angelflighteast.org.

What an amazing thing for families traveling afar to get the best health care for their children! THANK YOU Angel Flight East for all you do!!

BUILDING HAYDEN’S HOUSE- ONE FAMILY AT A TIME

THANK YOU to all who have helped kick off our campaign – whether you have donated, shared our posts, or sent packets to potential sponsors, your support is greatly appreciated! The excitement is still fresh and still growing! Please check out our website for more information on this campaign and how to donate. Every single dollar helps! www.haydenshouse.org

Stay tuned for our quarterly newsletter from Hayden’s House for updates- first edition coming soon!

Heart to Heart Gala

Veronica + Noah’s son Lucas passed away in December at three months old. Before his diagnosis, the couple had planned a trip to California to see the Redwoods but canceled soon after becoming aware of his condition. Hayden’s Heart was honored to be able to gift this holiday to this beautiful couple!

‘We loved our trip! It was so much fun to get out and explore a new area. Neither of us had been to the west coast before and we definitely had never seen trees like we did in the Redwoods! It was a breathtaking experience! My husband was like a little kid, so astonished and amazed at the size of the trees! It was so fun to see him so happy and carefree! The entire trip was just so beautiful and reminded me so much of our sweet boy. We always said that we would remember Lucas when we looked up in the trees, and this trip was just the perfect reminder of that!’
~Veronica, angel mama to Lucas

Contact us:

16 August 2017

Five years.

Five of the longest years of my life. And somehow the shortest all at the same time.
Five years since I kissed your face. I remember the last time I kissed your face. I hope I always remember that moment.

The first few years after Hayden died all I wanted was for time to pass quickly because everything I read and everything I heard told me that T I M E H E A L S.

So in my mind, the further I could get from August 16, 2012 - the better off I'd be.

I am now five years away from that day and yes - time has helped to heal parts of me- and it has also taught me a lot about myself and how to manage the pain and the tears. I feel pretty confident that I can say I am in control (for the most part) of my grief and that, in itself, is a good feeling. I no longer just collapse in the middle of my kitchen floor in pain from not having him in my arms. Actual pain in my chest like nothing I've ever felt. Maybe thats what a heart attack feels like- which would make sense because it truly felt like my heart was literally U N D E R A T T A C K.

My outbursts now are very very private. I am usually washing dishes or in the shower, or in the car. Always (almost always) alone. I thank the passing of time for this gift of privacy and control.

Time has also given my life joy again- and smiles- real life smiles. I actually wasn't sure for quite some time if I would ever truly be happy again. And I am.
I T R U L Y A M.
My life is so full of blessings and it is beautiful beyond words. And I know I have God to thank for every single piece of it.

I no longer want to die- and again fear death. For a few years I welcomed death and not that I would have taken control over that, but just the idea that if I went to heaven I would be with him again and that made me smile when very few other things did. Now the thought of death once again deeply frightens me and the thought of leaving my children in this world without me in their young and fragile years makes my stomach churn. I know Hayden is just fine - actually he is better than just fine - he is with God-
and he is P E R F E C T. He has no clue of the pain and ache in my heart to be with him again. Time has allowed me to realize this and accept this.

I no longer fear the nighttime and how my own thoughts of his death will torture me. I no longer wake up giving myself the pep talk 'You W I L L survive this day' and end my days with congratulating myself on surviving another day. I don't sit at the cemetery three times a week- I'm lucky if I get there three times a month. And I feel no guilt about that.

The thing I am most thankful to time for is no longer waking up in shock and to a nightmare. My own real life nightmare. For at least the first year I would wake up every morning and it would all come crashing back like waves and I would get caught up in an undertow that I couldn't escape. I would just start sobbing before I would even open my eyes. My nightmare was real. He died. He is never coming back. I have to find a way to not only survive this day, but every day for the rest of my life without him. The pain of all of that hitting me first thing every single morning for over a year is a pain I am so thankful to not feel on a constant basis. And anytime I hear of a family loosing their child, that is the first thing I think of. I immediately feel pain in my heart and tears down my face knowing that they too will be experiencing that nightmare for days, weeks, months or years to come.
It is E X C R U T I A T I N G.

Not all shock is gone though. There are still times it hits me- out of nowhere - in the middle of the day - between the craze of every day life - he died. This happened to us. Our baby died in my arms. He died because someone make a major fatal error. He could and should still be here. I watched his lips turn blue. He D I E D. And he is never coming back. And I will never see him again on this side of life. That pain has not healed. That pain - when it hits - is still excruciating.

Time doesn't heal. Time makes us wiser - teaches us how to live again.

The passing of time has done a lot for me in my grief - but its not just time. Its God. Its my family. My friends. My angel mamas. Our nonprofit and all who support it. My living children- my angels on earth. And Hayden. Making it my mission to honor him for the rest of my life has done so much for my soul. All of these things have helped heal me.

BUT the passing of time isn't always good.

With the passing of time comes more pain. Pain of not remembering what he smelled like. What he felt like. What it felt like to hold him. To hear his soft laugh and massage his scar. The farther away I am from August 16, 2012- the farther away I am from the last time I touched him, smelt him, kissed him and held him. And as unbearable as the pain of those first few years was, maybe just for a day I would take it back in just to be closer to the memories of our last days together.

'And maybe the miracle was even getting one moment with you'

01 August 2017

Hayden’s Heart Monthly Beat

AUGUST

BUILDING HAYDEN’S HOUSE- ONE FAMILY AT A TIME

At the end of July, we launched a two-year campaign for Hayden’s House of Healing called ‘Building Hayden’s House, One Family at a Time’. The idea behind this campaign is that families, couples, individuals, organizations, small businesses and big corporations will all come together to help us BUILD THIS HOUSE!

Please visit our website – www.haydenshouse.org- to learn more about this exciting campaign and the inspiration behind it! Furthermore, if you have not received a campaign packet in the mail and would like to, please email us with your mailing address. Thank you - as always- for your unconditional support- this is a big dream- but we believe in every piece of it and hope you will too!

Stay tuned for our quarterly newsletter from Hayden’s House for updates!

5th ANNUAL PA GOLF OUTING- SUCCESS!!

What an amazing event! We had 24 teams this year- breaking our record- AND a hole in one!! It is always such a treat to see so many familiar faces return year after year to help support our cause- and equally as exciting to have so many new supporters join this year, too!

Thank you to all of our sponsors and those who donated food and items for our raffle! Because of your support, our event was a smashing success! What a beautiful day to raise awareness and funds for a beautiful family- so grateful to have had Jude and his family with us for this special day!

BIG thanks to our board member, Becky, and her committee for all of their hard work in pulling off a very successful tournament and to Summer from Athleta for traveling far and giving her day once again to our cause!

Looking forward to next year!

BLOOD DRIVE- TOMORROW!!

Our Annual August blood drive at Arlington Elks Lodge 1992 in North Arlington NJ is taking place TOMORROW- Wednesday, August 2nd, from 3:00PM - 8:00PM. Our drive is one of the most successful of the summer and this year we have a goal of 60 registrants! It’s not too late to register or walk in and help us reach our goal! Bring a friend – or two! And help save lives!!

This is such an important event for us to give back to the blood bank in honor and memory of Hayden and all the blood he was given while he was here. Hayden received two blood transfusions and was placed on ECMO (a machine that provides both cardiac and respiratory support to persons whose heart and lungs are unable to provide an adequate amount of gas exchange to sustain life) before he died. While on ECMO for two days, he received enough blood equivalent to 20 + transfusions. We could never repay those who donated to give us those last two days with Hayden – so this is our way to give back. YOU are our way to give back in honor and memory of Hayden. Please join us for a very special and emotional day of saving lives!

To make an appointment (preferred), please call 1-800-RED CROSS (1-800-733-2767)

OR visit redcrossblood.org and enter Haydens Heart.

Another very deserving family took a ‘Hayden’s Holiday’ to Great Wolf Lodge in Ohio last month. They lost their four-month-old son Jasper last year and were hoping to go on a family trip that would be fun for their other two living children. Great Wolf Lodge was the perfect spot for this sweet family- and they felt their angel alongside them through it all.

“Jasper definitely made his presence known while on our trip. He had a favorite elephant toy while he was alive so now, of course, elephants are one of our favorite things and something we associate strongly with him. Xander was so excited to show me that they had won an elephant - "Look Mama, an elephant for Jasper!" I don't think we can ever thank all of you at Hayden's Heart enough for giving us the opportunity to make all these very special memories over the last few days. ‘

More information and official invitation coming soon!

25 July 2017

Once again words escape me as I try so hard to find a way to describe the intensity of the impact this retreat has on the women who have the opportunity to attend. It seems each year is better than the last and the connections that grow in just four short days together is unconceivable.

This year we coined the mantra 'Intent. Inspire. Ignite. Finding Purpose Amidst Tragedy.'

The idea behind this was to have our mamas grow throughout the weekend as their hearts began to heal and their bonds began to form. Words do not do justice to the feeling in our hearts as we literally witness through our very own eyes the forever lasting impact and life changing experience these mamas have.

The roller coaster of emotions we all go through together is INTENSE - because we all experience every. single. emotion. possible.

We cry. Oh do we cry. Raw, real, and passionate tears for our babies- no matter how old they were when they died - or how long ago they died- we cry our faces off. The pain is real. But we believe to experience healing, these moments are essential.

We smile. We laugh. We dance. We cry again. It is all the feels. All weekend long. We share our deepest saddest moments and our most joyous ones too. We share the ways we are putting one foot infront of the other since our tragedy. We share our tragedies. We tell our love story - the one that was cut off way too short- the one we ache to have back but can never be. We say their names over and over and over again. We talk about them. All weekend long. We relate to each other in ways no one else can. We bring them back to life for four days. And we feel them all around us and with us through it all.

This space and this time together quickly becomes sacred to these women and every single mama leaves a different person. Most get a piece of their old selves back and gift that to their families when they return home. All of them leave with a feeling of sisterhood where they are loved no matter what and are accepted with outstretched arms.

It truly is such a gift and honor to have these women trust in us year after year with the most intimate and sacred parts of their lives. As draining and emotional as this experience is for me, I am already looking forward to next year and the lives that will be impacted by this truly unique experience.

THANK YOU to all of the organizations and families who sponsored a mama this year and to all of the small businesses (some pictured below) who help us spoil these mamas with so much love!